The parents of a baby girl from Bangor, Co Down, are callling on the public to help them fund getting their daughter private medical care in London.
A JustGiving appeal fund has been created for Jorja Emerson who was born with a rare chromosome disorder called 1q43q44 deletion.
Jorja is currently in intensive care at the Royal Victoria Hospital in Belfast but her parents have been told the condition could be fatal because of genetic decaying brain tissue and should prepare for the worst.
However, Jorja’s parents, Robbie and Carly Emerson aren’t about to give up on their baby girl.
They say they’re not convinced by the terminal diagnosis and are desperately raising funds to receive a second opinion at a private neurology clinic in London.
Robin said: “Our first choice, would be to stay in the NHS but unfortunately the hospital has to request this and currently they won’t – sadly leaving private health care our only option.
“Jorja’s Neurologist informed us that Jorja has damage to her brain. But we are not 100% sure if this is genetic decaying of her tissue (as her neurologist states) or from multiple prolonged seizures. At one point Jorja had a 17-hour seizure which is why we would like a second opinion.”
Before her seizures Carly says their little girl was full of life.
She added: “Previous to this Jorja was a happy, loving, giggly baby who was otherwise developing well for her condition. We feel as Jorja’s parents that we need the best possible care we can provide for this complex condition and to give Jorja the best chance to recover.
“There are so many unanswered questions. In this short space of time Jorja has rapidly gone downhill and so we really need your help.”
Primarily Robin says the biggest problem now is finding the finance to move Jorja to London.
He explained: “There are huge costs in the need for us to take Jorja to England for private intensive care. The private hospital that we have made contact with requires £50,000 upfront as a deposit. This will cover us for roughly a week, and if we need to stay longer the cost will be £6,000+ per extra night.
“On top of this we will also have to arrange private air transport and accommodation. We are still unsure of these figures. We are thankful from the bottom of our hearts for any donation that we receive to help our baby girl.”
For further information go to www.justgiving.com/crowdfunding/jorja-emerson